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Date: February 19, 2008
Storywell...it's me again, kaitlin. this is my third post here. i had my first surgery on may 23, 2007. my wound stayed open from then until the end of october, then it closed. on 2/16, i noticed some drainage coming from the incision. i thought it was the incision line opening up a little bit from the skin not being "structurally sound". turns out, my cyst came back, with 4 sinuses this time. they aren't to the point where i need surgery, but my doctor gave me 2 antibiotics to try and get them down so they don't become infected.
Date: February 18, 2008
StoryHi, my namw is Andrew and i am 15 years old. i have just had my cysts surgically removed from my tail bone area .My condition was not like most people,usually most people develope 1 cyst, i had 2 cysts. I had my cysts removed a couple of days ago and prior to the surgery I was expecting the worst of the worst, but after the surgery there is no pain at all. I was put under general anestesia so i did not feel any pain during the process. There are 2 types of procedures the open and closed procedure, I had the closed procedure wich means I was stiched inside out with dissolving stiches on the inside and a few regular stiches on the outside, I also had a drainage tube that drained the fluids from that area into a little baggy that is attached to the tube. The tube is a little discomforting but managable to deal with. I am writing this story with my drainage tube still attached and i can do everything everyone else can i can sit,sleep,walk,shower and use the bathroom, with no pain at all. I was very lucky than my mother got me a surgeon/plastic surgeron and i wont have a disfiguring scar. I had some pain medication but very little. i never had any pain that i couldnt handle.
if you have any questions feel free to email me at boy11358@aol.com my name is Andrew
Date: February 17, 2008
StoryPerhaps all readers of this site need a story with happier ending. I am a 51 year old male. Never had any occurance of pilonidal cyst until late January 2008. Dermotologist diagnosed the pilonidal cyst. Suggested I see a surgeon regarding options. Symptoms were the customary swelling and pain while sitting or rising from sitting position. I started on 10-day regimen of Augmentin. About a week after diagnosis I saw evidence of small amount of seepage from area of the cyst; not bloody, but probably pus. Within a week after this drainage I was symptom free. On Feb 14th, 2008 I saw a surgeon who confirmed the fact that the cyst had drained. At this point we all agreed to simply leave well enough alone. No need for any treatment or preventative measures outside normal good hygiene. Surgeon stated that this may or may not ever reappear, however if it did within 6 months, I should see him regarding lancing or removal.
Date: February 14, 2008
Storyoh my goodness I got so wrapped up in my story I forgot to explain the second opinions thing...before my third surgery I saw a doctor in Lexington, Kentucky (where I go to school) and he scared me so much that my mom was even scared. He said that it would be risky to do the surgery because it could lead to me being in a wheelchair because if you keep having surgery in the same place eventually it will not develop the same. THIS IS NOT TRUE!! I went and got a second opinion and the surgeon said that was simply not true. and I trust this guy because he's one of the best pediatric surgeons in the state of Ohio. So if you are scared by a surgeon--see someone else who will comfort you at the same time as being real with you. There's my story..long but hopefully useful or at least semi-interesting to some!
-Mallory
Date: February 14, 2008
StorySPEAKING OF SECOND OPINIONS....don't let anyone scare you about having multiple surgeries for this condition. It's been said before on this website in other stories that you should find a surgeon you feel comfortable with and I couldn't agree more!
MY STORY GOES LIKE THIS...
Started out in the spring of 2001, when I noticed something funny in my crack (mind you, like most, i'm not modest about this subject or my rear anymore!). saw the doctor, started antibiotics and then was referred to a surgeon. saw the surgeon in june and had the area drained then had to pack every day with medicated gauze, which i don't even think they use anymore and if you go somewhere that does say "no thanks" because it's terribly painful and not necessary.
I postponed having surgery until November so that I could play soccer in the fall. I would not recommend doing this because I'm sure I caused more trauma to the site while playing. After this surgery my wound was left open to heal from the inside out. No problems whatsoever with the site, healed nicely and I was on my way by probably the end of february at the latest.
Second surgery=difficulties. February 2003
I was at conditioning for soccer in january when I felt pain while running. I reached down (again no modesty) and thought it was another cyst. Went to the emergency room and sure enough it was another cyst. It was pretty cool, they put dye into the opening and could see the entire tract, I could see it too which was weird. Anyway, this time the surgery took place within 2 weeks and the wound was closed. maybe a month later it was infected and a mess. I had to deal with packing it for prom!! finally healed in late June.
Third surgery=pure misery. December 2005
I was a sophomore in college at this point and had another cyst. I had the surgery in december of 05 and was put on KCI vac. it was wonderful for the healing process but absolute dread when it came to changing the wound. the foam tended to attach itself to my healing tissue and when it was torn away it was the worst pain I've ever felt in my life. My mom(who's a nurse) had to use an entire bottle of saline to get it out. I also screamed and cried at the doctor's office and I'm not like that...HOWEVER, that being said I feel strong for having to endure such pain and it is something I'm proud to have gotten through. So if you are concerned about pain, don't be too worried because even though it's miserable, I could handle it again and if I can get through something, anyone can :).
Moving on, the wound took about 15 months to heal but it didn't really affect my daily activities, mild on the exercise, but I still could walk to class, sit in class as long as it wasn't for more than 2 hours and I had a boyfriend who was very understanding and it didn't affect our relationship. I've found that people are typically pretty non-judgemental about this disease. I was on the vac for 2 months at first and then another month later on and people just kind of laughed and were curious about it. I don't know if any of you have had a vac but if you haven't it's pretty funny. it makes noises similar to passing gas, so it's at least entertaining because it's unpredictable. people wonder why you have a tube attached to you, and sometimes I'd have fun with it and say it was just a time saver so I didn't have to use the restroom..usually people looked terrified haha.
There are also plenty of ways to hide the tube when you are not connected to the vac. You can be off it for 2 hours a day, but the tube is still attached to you, so what I would do is just wrap the tube around my hips and tuck it into my jeans and wear a loose top so you couldn't see it. No one knew it was there, I did it to go out to the bars and parties (no drinking though or that sucker would never have healed!).
SO DON'T LET A PILONIDAL CYST KEEP YOU DOWN!! I always said when people felt sorry for me that there are a lot worse things in life, and I keep that in mind every day now.
**I'm also thinking at some point when I'm older of establishing a small scholarship to someone who is dealing with this disease and has multiple surgeries so that they can continue to go to school if they are unable to work during holidays and breaks due to surgeries.
Date: February 12, 2008
StoryHey everyone, I am a 25 year old male from Pennsylvania. I was looking through these stories to see how this has affected everyone else and I didn't read everything but I have been doing something that I haven't seen mentioned yet. I don't normally do stuff like there so here goes....
I first had pains in June 2007. Not really a lump or anything but a small cut that was bleeding, I went to the emergency room eventually and got some painkillers like most others. It went away for a while and came back strong in August of 2007, I could barely walk. Had it lanced, super painful, then surgery at the end of August. The doctors said I actually had 3 at once and they were about baseball sized, the weird part was that there was no external lump, not sure if there is supposed to be.
I have had some ups and downs with the recovery. Lots of problems getting the wound to heal and close. Its getting there still about an inch left. My healing has taken over 6 months but I also refused to use that wound vac, it just wasn't going to work with my occupation. Well I could go on and on about the details so here is why I wrote this......
What I noticed through these stories is that no one went to a plastic surgeon post pilonidal cyst surgery. I didn't originally but my surgeon recommended I go to a plastic surgeon for laser hair removal to prevent this from happening again. I saw a few entries that said it came back again. So, don't know if that helps but I figured I'd put it out there. My insurance covers most of it because it's not considered cosmetic surgery. The laser stuff doesn't feel great but if you have gotten that far you have been through it all involving your pain threshold and privacy. It doesn't hurt as much as the wound healed. Also, the two most important things I have learned is that adjustable shower heads are absolutely essential and tape sucks! Hope this helped and good luck to everyone I hope to be cyst free in a month or so.
Date: February 12, 2008
StoryI am 17 and live in the UK, it took the
doctors ages to discover that i had this disease, when finally dicovered i had operation which was in Augest 2007. I didnt have time to worry about the operation however i was quite scared as it was my first one. after the operation i felt rather uncomfitable and weak. as time went on i had to vist a nurse every day of the week so i could get my wound clean and packed which was rather akward as i am a student and missed a lot of lessons. as u talk about this diesase you gather that it is quite common as i found out many others who had this.
it is now Febuary 2008 and i still have a open wound, i recently visited the hospital and had bad news, i need another operation in a couple of months, as it will come back. i took news quite bad as it means im having another crap summer and more time of school and work, and quite frankly and sick and tired of getting my ass out in front of people lol.
Date: February 12, 2008
StoryHello
I'm from Portugal my 12 years old son have Pilonidal Disease, we discover it yesterday and he has to do a surgery.
He is young but he's not scare.
Everything is going to be allright...
Date: February 09, 2008
StoryIT PAYS TO GET A SECOND OPINION! I am 24 years old, and I've been living with Pilonidal Disease for about a year. I never had any major flare ups until about a month ago. A huge cyst formed - golf ball size - and I was in so much pain I could barely walk. I went to the doctor, who sent me home with an antibiotic (which I later found out I was allergic to) and a pain killer.
About 3 days later, my cyst turned to an abscess - I was referred to an on-call surgeon. He locally anesthetized the horrifically tender abscess (OH MY GOSH - IT HURT SO MUCH!). I felt every mili-second of every needle thrusting into my horrible wound. I screamed bloody murder, he drained and packed it - and I was sent on my merry little way. I was unpacked 2 days later, told to scrub twice a day in the shower, and keep the bandages clean.
Everything was going swimmingly...or so I thought. About 2 weeks of scrubbing (re-opening) went by, and I felt another lump form. I went back in just to have my surgeon look at it - well I ended up being locally anesthetized again (2nd time is worse!), screamed bloody murder, drained and packed. I then went in to be unpacked - and at this point, I started questioning my surgeon's methods for treating such an aggressive cyst. I just didn't think it would work the 2nd time, and I feared I would have to have more needles. I have plenty of tattoos, so it's not the needles that scare me- its the tremendous pain. I asked my doctor what his long term plan for treating this - different method? surgery? His answer included words like..."passive, conservative, wait it out for a month, dismal, and I don't know." All these words should be red flags!
I then called my family & my husband's family for a good surgeon. My aunt's surgeon called my cell phone (i couldnt believe it!) and set up an appointment with me. He was SO gentle, he used a numbing agent (no needle) so he could press on the area - he then told me the surgeon that peformed the drainage did not do the procedure properly. He also told me he would have sedated me (Twilight) and would have made the incisions larger, to make sure it drains properly. Unfortunately, I have to wait a week now for the inflamation to go down before I can be considered for surgery. He sent me home with an aggressive antibiotic, soap, ointment, and a different pain killer. He has had MUCH more experience dealing with these than the on-call surgeon.
I was so happy after leaving the 2nd surgeon's appointment - he said he will take care of it. He said I needed an aggressive doctor for an aggressive cyst. Which I now have, and I am completely confident with. I am also angry as can be that I had to endure 2 sessions of traumatic needles. I haven't approached surgery yet, but I am jumping on that train as soon as I'm cleared.
The moral of this story is...YOU ARE NOT MARRIED TO THE FIRST SURGEON YOU ARE REFERRED TO! You have EVERY right to get a 2nd opinion. If you don't feel comfortable, if you are subjected to too much pain, if you fear the worst and your doctor tells you to "wait it out" - GET A SECOND OPINION.
I can now look forward to less pain and surgeons who have more than adequate experience with pilonidals. There is light at the end of the tunnel. I now know I will have my life back, and I can give my husband a break - he deserves it! Always remember to thank the person that is helping you - thank them profusely! I will update after my surgery. I have a good surgeon, so I'm very confident I won't have to go through multiple surgeries. Time will tell. It's YOUR body, the ONLY body you have, take care of it - don't let doctors push you around. YOU are the keeper & caretaker of your own health - if you have doubts - GET A 2nd Opinion!
There is Hope!
Date: February 07, 2008
StoryI had a couple of days of soreness in my tailbone area that I felt the most when getting up after sitting for a while. After a couple of days the soreness got a little worse and I felt a bit of swelling at the top of the "crack" area/the bottom of my lower back. The swelling increased along with the pain over the next few days. Eventually I couldn't sit down or lay on my back. At its worst, I was in terrible pain no matter what position I was in and the pain only got worse with movement. Over these days, the treatments included hot baths with Epsom Salts, Epsom Salt compresses, and heating pads. I also used Neosporin even though there wasn't any opening on my skin at this point. I cleaned the area with Hydrogen Peroxide as well.
One morning, I woke up and it was so bad that I literally had to crawl to the bathroom in tears to use the toilet. When I sat on the seat, the pressure caused a sharp pain and I felt warmth and a rush of liquid. I looked in the mirror and found that the swelling had finally ruptured (over the days a patch of thinned skin had formed and I could tell that was the area where it would eventually drain.) At this point, I cleaned the area thoroughly with hydrogen peroxide and used sterile gauze pads to wipe away the pus and blood. After cleaning it, I smeared on a thick layer of Iodex (which I now consider miracle medicine) and then covered it with a gauze pad, taping it all in place. I then laid down with a heating pad on the area.
It's now been two or three days since it started draining and it's still draining pretty steadily. I've been changing the bandages every few hours, washing it, putting on more iodex, and re-bandaging and it seems to be doing well. The doctor also put me on Cephalexin, a strong antibiotic, and Tylenol with Codeine for the pain (though I haven't needed to use that much the past couple of days). It's been a really rough experience and I plan on having surgery to entirely remove the cyst once this flare-up is done because I never want this happening again, though I'm not sure when I'll have it done and haven't done much more research on it other than what I've read here.
I thought that my treatment might be of help to other people--the Iodex is really, really helpful and helps keep the area moist and keep it draining so pressure doesn't build up again. It also prevents it from getting any more infected ('cause it's an antiseptic). It helps with the pain because it warms up with your body heat. That and heating pads are what have helped me with pain the most. I'm also getting a special pad to sit on that has a semi-circle cut out of the back to relieve pressure on the tailbone, and I'm wearing a back-brace made to improve posture to take some of the pressure off while I'm at work since I have to work on my feet all day and standing up straight is tough with the cyst and my back has had a lot of strain put on it from the weird positions I've had to walk, sit, lay, and stand in. I hope some of this information helps some of you suffering from this horrible condition. My prayers go out to all of you =) --Marissa
Date: February 06, 2008
StoryI am a 46 year old female who was diagnosed with a pilonidal cyst in September 2007. This was at the time of my first flareup as the area became infected. My physician immediately referred me to a surgeon. The surgeon explained my options and said it was totally up to me as to when I chose to have the cyst removed. I could live with it if I wanted. I lead a very busy life and truly did not have time for this interruption!
Sitting was extremely difficult but the antibiotics remedied most of the inflammation. I found that I had a window of time available in late October thru December so the surgery was scheduled. My surgeon only performs the "open wound" type of removal. The surgery went extremely well; in fact only took 15 minutes to remove a cyst the size of the end of his thumb. I was prescribed a wound vac to be attached to aid with the wound healing process. I have nothing to compare but this process went very well according to my nurses. It was, without a doubt, an inconvenience. I was only able to shower every other day when the nurses came to change the dressing.
Mobility was somewhat of an issue as I was only able to stand or lay on my side or stomach. Sitting was impossible but mostly due to discomfort not the device. My incision was relatively small I'm told. Originally I was told that I would have the vac for 6 - 8 week but I was lucky enough to have it removed after 4 weeks. The wound was not totally closed but enough to warrant just a simple bandage dressing as there was very little drainage at this point.
It has now been 13 weeks and I have been totally healed for a 5 weeks. I had one area that reopened somewhat for a time but that has now healed again. My surgeon suggested that I leave the area exposed when home so it could air out. I used a small fan heater for a short time each night to dry it up and that seemed to help quite a bit. I still do have a bit of discomfort around the area. While I'm assured by my surgeon that this is normal, it concerns me. It would be nice to hear how long others have taken to feel to completely pain free again following surgery. There is no doubt that sitting for extended periods is not the best but often is unavoidable. I truly believe that my cyst developed thanks to a daily situps routine that I was ambitiously following. Now I am reluctant to do much physical activity that involved anything laying down.
Date: February 04, 2008
Storyi was gonna have the surgery for the pilonidal buddy (after 5 years living with it, i already had some cute little names for the cyst) on the next morning and i was way too anxious about the medical procedure. I ended up in this website referred by wikipedia and the testimonials did help a lot so today i thought...why not let myself one.
As I've said, I've lived with my little friend for more then 5 years with huge pains, tons of dressings and a lot of dirty boxers now and then. One day i woke up with a huge fever (not new, it's common when you suffer from pilonidal) and very localized pains on the area and i decided, that's it... i drove to the hospital where promptly i was diagnosed with a pilonidal cist(wow thanks docs,after 5 years that was a surprise :| ) and the doc said "you shall go to surgery very soon, go home do the same as you've done till here and we shall call you. 5 month after that appointment (go go national health care system) i got a call telling me i was having the surgery next day. and it comes to the point where i found about this website...i gotta confess i was brutally scared because i knew nothing on how the procedure was done. this website and people's experiences made me know what to except. THANK YOU ALL.
Now let's come back to my case. i got to the hospital at 8 am, changed clothes, waited till noon, had surgery, 1pm i was back in the recovery room all fresh and minty.
THE SURGERY : 0 pain except for the anesthesia, i couldn't feel my waist and legs. was both scary and uncomfortable
THE POST-SURGERY : changing dressings 2 times a day for the first week, then once every couple of days, always on the nursing center , one month and half after i was completely healed
TODAY : 4 months after the surgery i feel nothing wrong there. i can sit, rotate, shake hands, dance, and even kiss.
i think that the choice for "open-area" procedure is the best because in my case nurses were daily monitoring the advance of the healing process. plus a friend who did the same thing but with stitches has a very ugly scar now :)
as a resume, i strongly advise everyone to get surgery done because it's just not worthen to lose precious time cleaning your boxers and doing dressings every couple of days.
The surgery is easy, the recovery is easy if you are patient for the first couple of weeks.
thank you all for reading, and sharing
Lisbon, Portugal.
Date: February 04, 2008
StoryHi iam a 21 year old female from Scotland in the UK!
I am just recently out of hospital following surgery (incision and drainage) for a pilonidal abcess, this is my 2nd time in hospital, i had the same problem about 2 years ago!
It is a very painful and embarassing problem, both time i waited until the abcess was the size of a golf ball before i went to seek medical attention.
This time they tried to treat it for 2 days with metronidazole and augmentin however it worsened, i think went to A&E and was admitted to surgical ward where pain relief was administered and i was later taken to theatre for the prodecure, i have to get it packed daily at the moment which can be painful at times!
Due to the recurrence the consultant will see me in outpatients in 3 months to discuss further treatments therefeore i will hld off til then.
I have to be honest between flare ups i did never have any problems with the area.
I find this site very helpful and reasurring!
Well Done!
Date: February 01, 2008
StoryI am soooo glad I found this website. When I was first reading this website, I got scared because this was a "man's condition", and being a female, that doesn't help comfort me--until I read about the author of this website. I had the surgery about 12 years ago when I was 18. Back then, I was a freshman in college, and really didn't know what it was, except it was very painful, and embarassing. I went to the school infirmary, and they misdiagnosed it (I was away from home). I also went to a local urgent care center and they somewhat misdiagnosed it also. I told my parents, and they had me see my dad's doctor (apparently, this is hereditary in my family b/c my aunt had it also, and my dad had cysts form on the back of his head that continued to reappear until surgically removed).
I went back home to get the surgery and haven't had any problems since. Ironically, in my last year of college, I met another girl who had to go home to have the same surgery!
However, I'm very self-conscious about the scar, because I had the flap surgery (didn't know it at the time). At first, I thought it was a keloid, but now I realize that it was stitched that way. Not that too many people see my behind, but it's weird not to have a regular butt crack, LOL! The pictures on this website help, because now I don't feel so bad that I'm not the only one with a scarred behind! But, I still want to get plastic surgery on it to repair it, because 12 years later, the scar is still annoying. If anyone has gotten plastic surgery to repair their scar, please talk about it. I'm assuming it can be done.
Kudos to the women who have given birth with this condition--I don't have children yet, but now I know what to look forward to, and to expect. I'm hoping that I won't have to deal with it, but just in case, I'll know what it is.
-GG
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Date: January 31, 2008
StoryThank God someone else has been through this! I noticed a lump on my lower back the day I was moving to Chicago for a new job. I ignored the lump and pain for a day. I went to the ER when it was slightly bigger than a golf ball. I was begging them to cut me open and relieve the pressure. They wouldn't do anything. They gave me prescriptions for pain and infection. Two days later, it was larger than a tennis ball and I hurt so bad I cried. I went to a different hospital and while I was in the waiting room, the abcess broke open. (I didn't know what was wrong with me!) They ended up lancing and draining what was left. I layed there and cried, not because of the pain, but because of sheer embarrassment. I was told that I would need surgery after the infection healed, but had to cancel my surgery date. I have since moved back to Michigan and am contemplating surgery.
Although I have not had an infection since then (2 yrs ago), I am often in a great deal of pain. Is this normal after having an it get infected just once? I have an obvious scar from the tearing of my skin when it burst along with the incision. How bad is the scar after an "open healing". I have not yet told my new Dr. about this problem, but am more than ready to try and rid myself of the pain. Any help or advise would be great! Thanks, Carolyn
Date: January 30, 2008
StoryFollowing up from my Jan. 14, 2008 post below. The original post was 4 days after open wound excision surgery. Today is nearly 3 weeks after surgery and things are coming along nicely. As for an update, I was completely off of pain meds within 2 weeks and back in the gym at day 15. I am still cleaning and changing dressing 1-2 times per day but there is no pain associated with the wound anymore. I repeat.. NONE!! I do sit on a cushion for comfort but am now already able to sleep on my back for short periods of time. Before this, it was sleeping on your stomach or sides. After surgery, anything that puts the slightest pressure on the wound causes discomfort, additional drainage and mild pain.
Anyway, I am so glad to have had the surgery. I am going to my first post op doctors appointment in 5 days and look forward to getting the docs response to how I am doing. If you are having major flareups, suck up your pride and go have the surgery.
My closing words of wisdom are to have the surgery.... 2 weeks of discomfort is going to seem like nothing compared to the pain, discomfort, potentially emabrrasing situations avoided, etc. that you will avoid in your long future.
Date: January 29, 2008
StoryI am a female 42 years old. I never had any problems until the fall after I graduated from highschool. The first time I had a problem, I knew what it was because my twin sister also had it about two years prior. The first time I had a problem, I went to our family physician (a different one than my sister had) who prescribed antibiotics. The cyst cleared up, never drained, just went away. I thought I had gotten rid of it....so naive.
It came back about 5 months later and this time I went to yet another physcian who lanced it in the office. He left it open and packed it with ribbon soaked in some type of solution. I had many flare ups over the next year and finally went to a surgeon who operated on it in 1986. He stitched the wound up and again, I thought I was over the hump. The cyst came back less than 6 months later and I again had to have it lanced in the surgeon's office.
I wish I could tell you how many times I had it lanced and had to be on antibiotics over the next 2 years. I learned to live with it and never went to the doctors for it again after 1988. The antibiotics no longer worked and it flared up approximately every 2 to 2 1/2 months. When I was 34 years old, I found out I was pregnant after trying for a long time. When I was 3 months pregnant, I had a particularly bad flare up and went to my ob/gyn. He said we would "watch it" and see what happened as I didn't have many options at that time. By some miracle, and I can't think of any other way to describe it, I have not been bothered with my cyst since then. If I had it all to do over again, I would never have had the surgery. I lived with it 13 years after surgery and it became a part of my life. I thank God every day for taking it from me, cause there is no medical explanation for it going away, certainly nothing any doctor ever did.
My heart goes out to anyone who has once, especially someone just starting with it, because the fear of the unknown is the worst part. The best advice I can give is the keep the area VERY VERY CLEAN, don't scratch is the biggest thing, no matter how much it itches, because that's what gets the infaction started, and take nice warm baths, just hot water, no soap until your ready to clean the area and then shower. Good Luck!
Date: January 24, 2008
StoryI am a 20 year old male and I had the open surgery about 4 years ago. I was a catcher in high school and had the cyst since 1oth grade. So between sliding and dropping down to block balls those of you who have had a cyst can imagine how I felt doing that for 2 years. It really started to bleed one day during practice and BAM 3 months later I was in surgery and never got to play again. I had to change my dressings in school and I had to stand for several months in all of my classes. It was not much fun. Four years later I havent had any flareups and im extrememly hairy so I guess its goos so far. My advice to anyone is if you can deal with the pain of the cyst you can deal with the surgery. Get rid of your tail!! But the best thing is to wait until you are out of school if you can because its much easier.
Date: January 23, 2008
StoryHi, my name is Ria and I'm from Trinidad. Firstly, i must say that this web site have helped me alot in understanding what i was going through. My first experience occured about 8 years ago when i had this excruciating pain in my lower back for days. When it got so bad and I felt like I couldn't take the pain any more, I went to the doctor. I had local anesthetic and a whole lot of liquidy, smelly stuff came out. In about a week's time, I was ok.
Then in december last year, I got the same pain all over again, I went back to the doctor thinking that it was the same thing again and it would as simple as the last time. I was mistaken. The doctor referred me to a surgeon, who immediately explained to me what was wrong and went on to inform me that I had to have surgery under general anesthetic. I was put on antibiotics to dry out what ever liquid was there and reduce the swelling.
I had my surgery on December 17 and went home a few hours after. The first couple days were really bad. I vomitted for about 3 days straight (my reaction to the anesthetic). My doctor had left a tube in me to drain whatever liquids came out but for the first 4 days nothing did. Fortunately for me, my aunt is a nurse and she came by almost everyday to care for me. She took out the tube and continued to dress the area as usual. A few days later when she came by, it was draining liquid as if a pipe was open and it was very painful.
The very next day (christmas eve) i went back to my doctor and he took out the stitches and left it open. Before surgery, he and I had discussed leaving the wound open but during surgery, the wound went deeper that anticipated, so he stitched it from the inside. Since then it has been left open and it is still draining. The drain is not as much as before, just a few drops a day and my mom continues to clean the wound with warm water and salt. In reading these stories, alot of people critised their doctors but I must say, my doctors were wonderful. My surgeon had hands and fingers as light as feathers. He did a great job. I just hope that I never have to go through this again. Other than my doctors, my aunt and my mom really helped me through all of this and my mom is still here bearing with me everyday.
Date: January 21, 2008
StoryFirst of all let me thank everybody for there support. I will keep my story and suggestions very brief. I have had this sinus since I was 21. Now I am 29 and still living with it. Over these 8 years my first 5 were pretty painfull and hard. I think that was due to the nature of my hard labor jobs I had in the past. After reading all the stories from all different people I got scared of the surgery option. I decided to face it on my own withought the help of doctors or any medical treatment. I know I am living with it everyday, its there but I have learnt to live with it now. My suggestion to everybody out there would be, if you have patience and you can live with it then dont take the surgery route. Thank you all for your support
Date: January 19, 2008
StoryHi my name is Wendy and I am in the beginning stages of taking care of my fiance post surgery. Due to the nature of were the operation is done it is difficult to get a bandage to stay put so you can use the bathroom normally and not to tear the skin up with harsh tapes. I have found that Elastaplast about 3 inch works great. It holds great and does not hurt coming off. It is a little more pricey than regular tape but is worth every cent. It looks like an ace bandage but has adhesive on one side. It also comes off without all of the pain and leaves minimal residue. We hope this might help anyone just going into recovery.
Date: January 19, 2008
StoryThank you everyone for your stories. Here's a little about mine:
Five years ago I had the initial surgery, a simple removal of the cyst with a closed stitched incision. REcovery time was a few days, and I was back to normal. Sitting here today, I'm post-op the second attempt at removal, and I'm learning how to deal with an large open wound that I didn't anticipate. The doctor gave me no indication that my recovery would be any different than tne last time -- and so I'm educating myself (thanks to your website) on what i can do to be an active part of my recovery.
I want to remind all of you to thank the person who is helping you with your recovery. Not your doctor, but the parent, spouse or friend who packs the wound (looks at the ugliness of it) and who puts up with you when you're crabby because you feel like the cyst & your recovery are taking over your life. To my wife,I Love You.
Date: January 17, 2008
StoryI've got quite a story to add here!
Back in 2004 I was a senior in high school. My grades were good, I was getting ready for prom, etc. Then all of the sudden in gym class one day, we were doing stretches and I noticed a line on blood on my underwear. I really didn't think too much of it, nothing hurt so I just ignored it. Then every single time we had gym there would be blood on my underwear, one time it even went through my gym shorts! Pretty embarassing.
I was excused from gym for the rest of the year and had to see my doctor.
My doctor said that I have a hemmoroid and then I shouldn't worry about it. Okay! They are doctors and know the answers to everything...right? Not even close.
Months went on and it would bleed when I went to the bathroom. Eventually it stopped, and a few weeks later I noticed a tiny bump at the base of my spine -accompanied with some pain when sitting.
I ignored it at first because a.) i didnt think itd be connected to my bleeding. and b.) i thought it was just a pimple or something.
Eventually it started getting bigger and bigger. My back pain got worse and it was difficult to do normal, every day things such as sit, lay down on my back, carry a back pack.
Once again - back to the doctor! I honestly dont remember what they said it was at this point, but either way they were not concerned. Okay...I was getting a little upset now but we listened because we never heard of anything like it.
Then out of no where! I woke up one day for school and this thing was huge and hard. I went home from school and took a hot bath which dulled the pain a little but not much. That night i remember having super bad chills and feeling absolutely nauseous. I was exhausted too.
I went to class the next day and someone bumped into me when I was at my locker. I started to CRY!!!! It hurt so bad I felt like someone carved a knife into my lower back. I called my dad and he picked me up from school and took me to the doctor.
Oh!!! All of the sudden...you have a very bad infection and we're going to send you to this surgeon now!
I went straight to the surgeon's office, a guy I've never seen before in my life.
He had me go to sit on the waiting table and BAM! All of the sudden this TERRIBLE, GOD AWFUL SMELLING fluid came out of the cyst. Everywhere and it was a ton of it. I almosted vomited and I was crying, I didnt realize what happened.
My cyst exploded. I had to have emergency surgery that night because my infection was almost to the point of gangreen. If it did not explode that day and the infection stayed in me, i would have died.
My parents were furious. We saw the doctors through this entire ordeal and they never did anything about it until I almost died. We had no knowledge of what it was and figured hey, thats what a DOCTOR is for!
I had the surgery that they took the rest of the cyst out and then stitched it up right away. That didnt work and a got another small one shortly after that. They did another surgery, this one i was awake for w/ epidural (MUCH BETTER!) and they left it open to heal.
The packing, oh god the packing. I hated having nurses come to my house every day and pack my open wound. And it hurt!!! It was a huge wound because the cyst was huge. It looked like i was wearing a darn diaper because of all the bandages I had on me.
As terrible as it was, eventually my wound healed.
Then in Summer 2007, i had pain back there again. I bled a little one day and then the area swelled up and hurt alot. I went back to a surgeon (a different one this time) and he said there was no cyst there but i had another sinus opening. I could of had surgery but it may have done more harm than better, so i chose to live with the sinus and keep it very clean.
My problem in highschool was I dont think i had as good hygene as i could have, lets say. Im pretty sure thats what caused me to have the cyst in the first place and have it become so infected.
I still have the sinus. It only bleeds when I go to the bathroom, and the "area" flares up sometimes when I am off my birth control pills. But otherwise it's usually ok. I am keeping careful watch on this though.
I'm getting married in June and this is not an issue that I want to have during that time. If the bleeding worsens, if I notice any pain, or ANY tiny bumps at all, im going to back to the surgeon. If i have the surgery when the cyst is small (if one even forms) it will be better.
But to anyone who goes through this, MY GOD i know it's terrible. It's the worst experience I've ever had. This site is fantastic though and it's good to know we're not alone.
Jess
Date: January 15, 2008
StoryI first have to give a big thank you out to everyone before me who posted their stories and this site in general for having such great information. I'm glad I'm finally able to tell my story.
I was pregnant most all of last year and in the end of those months was on bed rest. In February I gave birth to a little boy and within about a week or so I got sore while sitting but I thought oh just part of birth pains. A friend of mine told me she actually broke her tail bone while giving birth so I figured maybe I did that. Finally after 3 weeks of increasing pain (keep in mind I had a c-section the first 2 weeks after birth I was on so much medication from that pain I didn't notice the other pains so much) I went in thinking I dislocated my tail bone but instead they informed me I had a pilonidal cyst that had abscessed and needed emergency surgery.
The doctor sent me home with antibiotic to take for 2 days to see if it would help the infection but it did nothing.
I remember going back in, and having him tell me to go home, pack a bag, and come back for surgery in two hours you need this done today. Freaked out I go home, find someone to help take care of my infant son so my husband can drive me to the hospital. They did the surgery and I stayed overnight. Due to the amount of infection it was open wound healing which by the way was horrible with a 3 week old baby I never want to go though that again.
Before I went to the doctor I had no clue I had these, and they informed me I have two others that I should take care of at some time. My wound is now all the way healed and even though it feels kinda funny there it's barely noticeable scar wise.
Date: January 15, 2008
StoryHi there.
Im 27 years old and ive had 4 closed surgeries and 2 open.
It started when i was 20 years old. Anywho :)
I would just like to point out that "if" your going to have an open one (seems to work better on me)
Ask your Dr if he can use Aquacel packings.
They are more expensive i know but 100% less painfull when they change it every day.
And here are few things that ive been told might have slowed my recovery down all this time.
Im hairy = shold have a laser hair remove...
I smoke = It really doesnt help your body at all :)
I used to eat junk food = Not anymore.
I dint take any vitamins = Taking Zink and some other stuff now.
I used to go to Dr that dint know sinus at all = still a problem.
So just hang in there folks , it could be worse...it really could.
Date: January 15, 2008
StoryHi,
I just wanted to do a two year follow up on my surgery. I had had a cyst for 6 years before I got it treated, mostly because it only had mild flareups because it was continually draining every 1-2 days during that time. However, enough was enough and I had my surgery done by Group Health in Seattle.
Apparently I had a large cyst (full of hair -textbook example) and a side abscess so a pretty fair amount of tissue was removed. I have a three inch scar now. The wound was packed with pain killer and a small gap was left at the highest point in the stitches to let anything drain and for silver nitrate treatments. I had no gauze packing and therefore no painful gauze swaps. Just gauze over the whole thing.
I had almost not discomfort after the surgery and was back, sitting, at work three days later. About a week after that I started silver nitrate treatments that lasted for about 2 months. The silver nitrate caused a lot of tissue to slough off and a lot of drainage as well as general swelling that made things less comfortable. I soon learned to sense when the cavity was full and to take a bathroom break to drain every 1-2 hours at work. Just squatting over the toilet was enough pressure to squeeze everything out. It was very convenient. In all though the silver nitrate was doing its job nicely and things were healing.
I did have one complication. The silver nitrate was not reaching further to the left where the abscess had been. I noticed this after two weeks as it sounded like there were little air bubbles under the scar (little popping noises). The doctor made a small incision along the original scar line and treated this penny sized area separately with silver nitrate.
After about three months the wound finally closed. Yeah.
It was been two years since my surgery. Other than an obvious scar things had been good. I hope that everyone can have such a successful result. It feels so nice to know it is gone.
Date: January 14, 2008
StoryReading these stories, and reflecting on my own experience, a couple of things are clear to me:
1) I'm unusual in going to the doctor pretty fast after noticing a problem, which I hope saved me some suffering.
2) Don't believe all the things that say you're in the clear after a certain age. I first had a problem at age 44.
3) A lot of doctors are pretty ignorant about this.
I'd had a pit in the midline for as long as I can remember and, not to be too gross, I just thought it looked like a blackhead but it couldn't be squeezed out. I ignored it. I now know that it was ingrown hairs, and that pit had been a problem waiting to happen for probably 15 years.
I got what looked like a blood blister, not that painful, about two inches away from the pit, above and to one side. Never occurred to me they were connected. After a couple of weeks it burst. Then it slowly drained thin, yellow-ish fluid constantly, and sometimes blood. I kept thinking I should get it to close up and heal, but on the couple of times it did, it just swelled up with fluid again, became painful, and burst after a few days.
So after a couple of months of being sick of stains on my shorts, I went to a doctor. She said might be a pilonidal, but the "blister" is always on the midline (WRONG). But pilonidal or not, it's an abscess, so I'll put you on antibiotics (WRONG AGAIN).The antibiotics did nothing, so I went to a surgeon.
The surgeon said looks like it's caught pretty early (though it had probably been tunneling for years, just not abscessed), and it's not too deep. I'd had it for four months at this point, and the surgeon said look, it's only going to get worse. Let's open it up, take away some of the skin so it stays open post-op, clean out the debris, and dig out the pit. Didn't stitch me up. It took about 10 minutes in his office under a local. (The local hurst like a bitch going in because of where they have to stick the needle, but it's only for a minute.)Seeing the clump of hair they pulled out of the pit made me gag.
The main incision, where the blister was, is an opening about half the size of a penny, and skin-deep.
Changing the dressing that night was tricky, and I didn't soak it enough, so I hurt myself pulling the original one off. Sharp pain and copious bleeding. Totally my own fault. But aside from that, I experienced ZERO post-op pain. None. Didn't even take a Tylenol, and I'm a baby - I take stuff very readily.
Surgery was Friday, today's Monday, and bleeding is so minimal that I went to work today, no problem.
The main incision where the blister was looks fine, healing well. But I'm a little worried about the little slice where the pit was. It's all the way in there, so it can't really air out. Don't know if that matters.
I'm also amazed that there's no instruction for topical antibiotic or something like that.
Anyway, so far so good - and a lot better than I had feared.
Date: January 14, 2008
StoryHi, just writing a follow up after about 8 years and 3 lancings. My cyst always had a slow drain, and although I had to pad my underwear to prevent embarrasing seapage, I was quite comfortable living with my condition. I am 35 years old (male)and have read that chances of recurrance diminish as one approaches 40 years old so I figured, I would ride with the odds until I hit 40. 4 months ago, I had my 4th flair up. I live in a new town, and the colon specialist who lanced it told me that the size of the cyst warranted it coming out. The pain on this 4th one, may have been worse then the others, because I relented to having the surgery.
Needless to say, I had open excision performed 4 days ago. Massive pain for the first few days is offset by the tremendous amount of prescription meds that they gave me. My doctor even described the surgery to be "like a shark bite". He mentioned that the main cyst was larger then a golf ball. I do not know how deep or wide it is, but I would guess at least 4 inches long and 2 inches wide. I have been changing the dressings myself 2x a day and showering 2x a day. Based on results from this and other websites, I hope to return to a 50% normal life in the next 10 days, followed with another 6 weeks for the wound to close 90%.
In my fresh off surgery opinion, the pain from the after surgery is comparable to the pain from the cyst during a major flair up. Yes, that bad!!! The difference is that you know that the pain is for a good cause and that you have medicine to combat the pain. I do look forward to a hopeful life with recurrances. This site is awesome and has tons of info. on the disease, diet, aftercare, doctors, etc. If you are new to this, you might as well save this site as a 'Favorite' because you will find yourself visiting quite alot. Good luck. I will report back over the next few weeks as things progress along, either good or bad. Until then plenty or rest, protein, and cleaning and packing.
Date: January 11, 2008
StoryI am so glad to have found this website! I have been dealing with my cyst and sinus for over 16 years (I'm a 23 year female now), and was embarassed to see anyone about it. I'm glad to know I'm not the only one out there with this uncomfortable sore. I read an earlier blogger's message about staying active vs sitting. I disagree with the statement that the cyst gets worse with inactivity. I have been training to be a figure competitor for the last 4 months, spending around 2-3 hours in the gym a day, and the cyst is getting worse! I am now looking into having surgery to remove my "tail" (as I have lovingly named it). Any recommendations? Thanks! Golden, CO
Date: January 08, 2008
StoryI first had problems when I was about 13 years old. I had fallen off of a slide at age 11 and still think this was the root of my problem. I never told my mother about the slide or the flare up at age 13,16,and by age 18 to 28 I was a pro at knowing when it was going to begin and taking care of matters. At age 28 I had alot of stress and was in the middle of a job change and getting ready to move when it flared up. This time it had to be lanced too much scar tissue had formed over the years for it to drain on it's own anymore.
The lancing was the most horrible experience I have ever had. The smell, the pain and the packing and soaking of the wound twice a day for almost two weeks was hell as I lived on my own and had no tub. Thank goodness my boyfriend lived 2 blocks away and had a tub. Betewwn him and my mother or sister comming over the packing got done as well. I was told then to see a plastic surgeon for consultation, that it would happen again and it would be worse.
My P.S. also chose the Z plastis as the best thing for me. I am over weight and have a large butt to begin with so the z cut would allow for better healing.2 weeks before my 30th birthday I was slated for the procedure.
When the surgery was done she said she had taken out several roots as well to ensure that it did not come back. As far as what was in there she said I just really did not want to know. She said it is amazing the things that the body can do. I suspect there were teeth or something in there LOL.
I was on pain meds for a while, my healing went smoothly and I drove and moved from MD to VA just 2 weekends after the surgery. I had nerve damage to several areas of the incision but within 2 years all tingling had stopped and all feeling was back. My family and friends now call me Frankenbutt but it is well worth it! I am now almost 38 and have not had a single problem since,I wish I had gotten it done years before I did.
Date: January 08, 2008
StoryHi Everyone.
I had pilonidal cyst .
and i had 2 surgeries with 2 diffrent surgen.
but the third one has been succesful so far.
the third surgery was Z plesty.
and they advise me to do laser.
and i have been doing laser treatment .
if u guys would like to get result go to Dr Jonathan Worsey . ( he is in san digego).. Scripps Memorial Hospital.
His phone number is : (858) 558-2272
I am very happy with my result.
He is great !
I have been through horrible pains and surgeries before i meet Dr worsey.
He made it work for me hope he could make it work for u.
Let me know how it goes for u guys.
Hope i could of help u !
Good luck everybody :)
Date: January 03, 2008
StoryHi everyone my name is Keri and I have been dealing with this problem for 3 years. I have had two surgeries. I find it interesting in these articles that many people recall having trauma to their tail bone region long before the cyst occurred. When I was 14 I was in gymnastics and fell strait onto my tail bone on a gym floor and the doctors said I may have bruised my tail bone. When I was 19 I woke up one morning in extreme pain and went to the emergency room when they lanced the cyst. I then saw a surgeon who told me surgery was the best option. I elected to have the surgery and it was a closed incision (with stitches). DON't DO this-very painful.
About 6 months after the surgery I had fluid building again. I went to another surgeon and he lanced the area and packed it was gauze. I then decided to opt for the different surgery where he would do leave the incision open to heal. This wasn't as painful and I didn't have any problems for over two years. I started a job 6 months ago where all I do is sit and low and behold I have pain and a sinus opening at my incision site. I do not know what to do, but I do know that I am not going to have surgery again and that IF YOU HAVE THIS PROBLEM YOU NEED TO LIVE AN ACTIVE LIFE. SITTING ALOT MAKES THINGS VERY MUCH WORSE. I had no flare ups until i stopped being active. I feel that this is horrible and I don't understand where this problem is coming from and why every time they do surgery they don't seem to be able to tell you that they found the cause of the problem. They just say they scooped something out. Good Luck everyone.
Date: January 03, 2008
StoryLaying on the couch at the moment, had surgery early in the morning. Really tired and a bit of pain. This was my 2nd surgery, the first one never healed properly (about 6yrs ago). The Doctor game me a Primary Closure with closed-suction drainage and antiseptic flushing of the wound. I'm a bit nervous b/c he said he was gonna do an open excision but I guess changed his mind given my situation (a bit more complex). Will give updates.
Date: January 02, 2008
StoryHi guys, Dori from Baltimore. I keep reading all of these personal stories, and I am hoping that this year, all of you will take good care of yourselves and make a very important resolution, please stop having surgery after surgery, and find a doctor on this web-site that knows the Bascom procedure. In case you were not aware there are three doctors in the world who can claim an almost perfect success rate with their patients, this is a fact, and you can research it yourself. one doctor lives in Australia, the other in Greece, and my personal favorite-Dr Bascom lives in Oregon.
I had driven my son all over Maryland to see Doctor after Doctor for 7 different surgeries, and one who tried to get me to put him in the hyperbaric chamber! These doctors all tried to help my son, they just didn't know as much as the other doctors on this web-site that have been trained to do the Bascom procedure. These three incredible doctors that I told you about have trained many other doctors to have success with this awful disease. Don't write again about your failures in surgery, do what I did and find a doctor on this web-site. My son and I flew to Oregon last year to meet Drs. Tom and John Bascom, and they did surgery on my son, and he is in follow up care with Dr. Zachary Martin at Good Samaritan Hospital, in Maryland. He will probably never need another surgery again, because I have a great team taking good care of my son. Dr John Bascom has called several times to check on James, and Dr Tom Bascom has called me back, when I was worried about him as well. Dr Martin wants to see my son weekly. The Bascoms' are documenting his case with Dr. Martin. You may have to search for a doctor, but the reason you are not healing, is not because of you, it's not your body, it's your surgeon, because they don't know this procedure. Please make this your final surgery, use this web-site and find a doctor in your area, or some where near your state. Take care for now, If you need to talk I may leave my E-mail adress the next time I write if it is requested. God bless, Dori |
